Oliver lies under a perspex head box so the air can be saturated with oxygen. He is being fed mum's breastmilk from a bag by a nasogastric tube, with his oxygen saturation and heart rate being monitored by a separate machine, and three drip lines feeding in to his recently implanted infuser port. Yesterday was completely different, and no doubt tomorrow will be aswell. It's as if our little boy's body is falling apart with everything affecting everything else. I have always been amazed at the fine balance the body maintains, and how a minor change can make us sick. Though still amazed by the body's fine balance, when it's my 8 month old son, and he is majorly out of whack in various areas, my amazement quickly turns to fear, anger, sadness and a complete helplessness as I stand by knowing that I can do nothing other than hold his little hand or gently pat his distended tummy.
Yesterday afternoon he was happily feeding and cuddling with his mum in a comfy chair. As the evening wore on his oxygen saturation level dropped further and further. Minutes wore on as the nurse did what she could. Minutes turned to hours as doctors and consultants were brought in and referred to. Oliver's breathing became more laboured, he became more distressed and was none to keen on the oxygen mask being waved at him. An x-ray was done of his chest, revealing a decent amount of fluid in his lungs. And so he was given more doses of diuretics to encourage the removal of fluid from his body, though at the risk of drying him out as the fluid balance in his blood vessels vs in his tissues was out and he was already oedemus (lots of fluid in his tissues). As a result, today found him undergoing a necessary change in how he is handled and so, as a result, he can't breastfeed and is receiving all of his oral medications and foods via a nasogastric tube, with his fluid levels under constant watch. Although indicative of how tired his little body is, it is a blessing that he is settled and sleepy under the head box and not crying and fighting to get out.
Yesterday afternoon he was happily feeding and cuddling with his mum in a comfy chair. As the evening wore on his oxygen saturation level dropped further and further. Minutes wore on as the nurse did what she could. Minutes turned to hours as doctors and consultants were brought in and referred to. Oliver's breathing became more laboured, he became more distressed and was none to keen on the oxygen mask being waved at him. An x-ray was done of his chest, revealing a decent amount of fluid in his lungs. And so he was given more doses of diuretics to encourage the removal of fluid from his body, though at the risk of drying him out as the fluid balance in his blood vessels vs in his tissues was out and he was already oedemus (lots of fluid in his tissues). As a result, today found him undergoing a necessary change in how he is handled and so, as a result, he can't breastfeed and is receiving all of his oral medications and foods via a nasogastric tube, with his fluid levels under constant watch. Although indicative of how tired his little body is, it is a blessing that he is settled and sleepy under the head box and not crying and fighting to get out.
The night before had seen his temperature drop and remain low, ultimately resulting in him being wrapped in an ICU emergency blanket for nearly all of yesterday. In fact, it was just after taking him out of it that the oxygen thing began. Oliver has been keeping the staff on their toes ever since he arrived, maybe this was him changing tack.
Each evening I wonder what things I might do the next day, with the understanding that my little boy, although sick, will feed and sleep and allow us to do some regular things without turmoil. That has yet to happen. Each day is a constant rescheduling and reassessing of plans, and a reminder that above all, I am here for my son. To love him and support him in whatever way I can, no matter how trivial or useless I feel.
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